How WeCarry Love

o o o

Judith Lieberman

Copyrighted Material

How We Carry Love

Copyright © 2019 by Allen Samelson. All Rights Reserved.

No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means—electronic, mechanical, photocopying, recording or otherwise—without prior written permission from the publisher, except for the inclusion of brief quotations in a review.

ISBN: 978-0-578-42840-6

Printed in the United States of America

Front and back cover photographs of Codornices Creek, © 2018, Allen Samelson

Cover and Interior design: 1106 Design

For Avi and Leah

Nothing Gold Can Stay

Nature’s first green is gold,

Her hardest hue to hold.

Her early leaf’s a flower;

But only so an hour.

Then leaf subsides to leaf.

So Eden sank to grief,

So dawn goes down to day.

Nothing gold can stay.

—Robert Frost

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o

Contents

Preface vii

Introduction 1

Chapter 1: Why Summer in Phoenix? 7

Chapter 2: Recuperating and Rebuilding 35

Chapter 3: Learning to Live Large 65

Chapter 4: Boom! 115

Chapter 5: A Second Surgery 131

Chapter 6: Chutes and Ladders 137

Chapter 7: Living in Limbo 183

Chapter 8: How We Carry Love 225

Afterword 249

Acknowledgments 277

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o

P�eface

Judy Lieberman passed away from cancer on July 25, 2013, at age

56. Judy was my wife and the mother of our two children, Avi and

Leah, who were then 25 and 20, respectively. Judy also was a sister

to her three brothers, a sister-in-law to my three siblings, a cousin

and an aunt to numerous nieces and nephews in her large, extended

family, a beloved friend to many, and a trusted and valued colleague

among her co-workers and peers in the community.

In 2011, just before her first major surgery, Judy started a blog

so she could more easily provide update reports on her progress to

her wide circle of family and friends. During her recovery from that

difficult surgery, and through the ups and downs of her illness over

the following two years, the blog became a public journal where Judy

bravely communicated her experiences, feelings, and reflections about

traversing through “cancer land,” living with a disabling medical

condition, and ultimately, facing terminal illness.

Remarkably, these writings are not depressing. Judy’s blog was,

instead, a generous invitation that allowed us to become closer to her

in times of her own greatest vulnerability. These pages are a testa-

ment to Judy’s inner strength and humanity, as she showed that it’s

possible to keep our world open and connected, rather than closed

Judith Lieberman

– viii –

and narrow in our most difficult times. They also demonstrate how

we can live with meaning and laughter, even when directly facing our

mortality—which, as Buddhists teach, is our constant condition. In

these ways, Judy has given us an enduring gift.

— Allen Samelson

Berkeley, California

October 2018

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o

Int�oduction

Judy’s journey with cancer started in 1997, when she noticed a

small lump in the left side of her neck. She consulted a local ear,

nose, and throat doctor (an “otolaryngologist,” we came to learn),

who removed the mass in a quick outpatient procedure at a nearby

hospital. A pathology specimen was sent to the University of California

at San Francisco (ucsf); the results came back as “low-grade muco-

epidermoid carcinoma,” a relatively rare form of oral cancer. While

we were alarmed by the diagnosis, the local doctor reported he had

removed the tumor very cleanly and said this type of slow-growing

tumor is “hardly considered cancer.” But there was a major caveat:

the ucsf Tumor Board of oncologists told us the mass removed from

the area around Judy’s salivary glands was most likely not the primary

cancer site. In other words, there probably was something else lurking

“out there.” However, no other evidence of disease was detected in

any of the extensive tests Judy had at the time. So the Tumor Board

recommended semi-annual exams and scans for monitoring over

the next five years.

Judy diligently followed that regimen. As each subsequent test and

exam came out “unremarkable,” our concerns gradually disappeared,

like the fog that appears in the morning and dissipates by noon on

Judith Lieberman

– 2 –

many summer days in the Berkeley hills. In 2002, at the end of those

five years, we were happy to be sent on our way, believing our worries

essentially were over.

In 2009, however, Judy felt something unusual in the back of her

mouth—more of a “bump” than a “lump,” she said. We went back

to the otolaryngologist at ucsf whom we had last seen seven years

earlier. New scans and a biopsy gave us very bad news: a malignant

tumor of the same pathology, but now it was situated at the base of

Judy’s tongue. Her doctor advised that although the tumor was still

very slow-growing, it would eventually impact Judy’s ability to speak

and swallow.

It soon became clear that none of the choices we were given to deal

with this cancer was good. As we considered the treatment options, I

sometimes perversely envied other patients at the cancer centers who

seemingly had more straightforward and less visible and “impactful”

disease, like breast cancer (!). Of course, I soon learned there is no

“better” form of cancer; every cancer patient, along with their families,

is permanently affected by the disease in very deep ways.

When we asked ourselves the unanswerable question, “why me/

us?” it seemed ironic that Judy had oral cancer. Eating and speaking are

important to everyone, of course, but Judy was a true “people person.”

She enjoyed almost everyone she encountered, and people responded

warmly to her unfailingly friendly and outgoing manner. Judy strongly

believed in being involved in her community, and she “walked the

walk.” She was active in our children’s schools, and she served on the

school’s board of directors as well as on the board of our synagogue.

At the city of Albany, Judy eventually became Assistant City Manager

and was involved in a wide variety of programs in the community.

Judy was known for her ability to work cooperatively with just about

How We Carry Love

– 3 –

anyone, so she was often drafted to break logjams and negotiate solu-

tions in particularly contentious situations. For Judy to potentially

lose her ability to speak seemed totally unjustifiable, like some kind of

cosmically cruel joke.

We sought advice on this recurrence of the disease from some of

the leading cancer centers in the country. Ultimately, Judy decided to

undergo an eight-week course of radiation, coupled with chemotherapy,

at the comprehensive cancer center located closest to our home.

The treatment was extremely difficult. The chemo had the stan-

dard effects—severe nausea, hair loss, unbelievable fatigue—and after

a few weeks, as anticipated, the focused radiation on the back of her

tongue affected Judy’s ability to swallow and speak. However, because

she was in otherwise excellent health and physical condition, Judy

was able to recover almost fully from the grueling treatment within

several weeks. Moreover, the doctors were pleased with the results.

Judy soon returned to work at the city, and we started to see our

lives return to almost normal over the next two years. As her doc-

tor happily remarked that Judy’s appointments had almost become

“boring,” we even allowed ourselves to feel hopeful that we might put

this disease behind us.

So we were devastated when a scan in the spring of 2011 showed a

second recurrence of the tumor—this time at the base of her tongue

and in her salivary glands. After another round of consultations at

leading cancer hospitals, Judy decided to undergo surgery at the Mayo

Clinic’s Phoenix, Arizona hospital.

The surgery Judy had in August 2011 (when she started her

blog) was essentially a two-part, six-hour operation. The first part

was to remove the primary tumor and other evidence of the dis-

ease in her salivary-gland areas on both sides of her neck. Once

Judith Lieberman

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that was accomplished, extensive reconstructive surgery was done

on her tongue to help Judy maintain her speaking and swallowing

capabilities. After three days in the surgical Intensive Care Unit

and several more days in the “head and neck” unit of the Mayo

hospital, we spent two weeks in a difficult recovery at the American

Cancer Society’s “Hope Lodge,” which is adjacent to the hospital in

Phoenix. We returned home to Berkeley around Labor Day. Over

the next few months as she regained her strength, Judy gradually

recovered a workable portion of her speaking and swallowing, and

she returned to a good, but markedly affected, version of her life

before cancer.

The reprieve was short, however. The cancer returned for a third

time just one year later. In the fall of 2012, Judy tried yet another

operation in San Francisco, but the cancer had spread more extensively

than anticipated, so again the tumor removal and reconstruction

surgery were unsuccessful. After this operation, Judy was barely able

to swallow and never able to speak again. We eventually got used to

hearing “Heather,” Judy’s nickname for the voice she selected in the

text-to-speech app on her iPad, as Judy typed what she wanted to

communicate.

By the spring of 2013, Judy’s condition worsened. She was offered

one last course of chemotherapy. Although the first treatment provided

some improvement, the second and third treatments had no effect.

Her doctors told us they had run out of options.

In June 2013, we arranged for hospice care at home. Judy chose

to spend her remaining time in our family den, with its bay window

overlooking the garden that she had redesigned and tended with care

over the previous several years. The room is described in a poem Judy

composed, which became her final blog entry (and the title of this

How We Carry Love

– 5 –

book). Did Judy know she was only a few weeks or days away from

her death when she wrote: “How lucky I am!” in that poem? Yes, I

believe she did.

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o

C h a p t e r 1

Why Summe� in Phoenix?

Not That Anyone Is CountingJuly 21, 2011

Well, it’s D-Day minus 6, or something like that. Allen and I are leav-

ing for Mayo Clinic Arizona on Sunday evening. We have Monday free

to enjoy the 110-degree weather, I have a day of pre-ops on Tuesday,

and the surgery is scheduled for Wednesday. I’ll be in the hospital for

a week to ten days and then plan to stay in Phoenix for follow-up for

approximately three more weeks. (We have tickets for the Giants game

on August 30, but that may be too much to ask…) Some wonderful

friends and family members will be helping by coming to stay with

Allen and me at various times. Avi and Leah will be at home holding

down the fort for a couple of weeks on their own.

This is good timing for me work-wise, and I am happy to have

brought some projects to fruition over the past couple of months.

I am now trying to prepare as best I can, including going to movies

and museums, playing Scrabble, exercising, and doing acupuncture

to properly align my chi! But mostly I’m hanging out with my won-

derful husband, kids, friends, and family, talking, eating, pondering

life, and laughing as much as possible.

Judith Lieberman

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Hospital Couture? July 24, 2011

We had a lovely day yesterday, involving much good food, walks by

the Bay, and general hanging around home. We’re flying out to Phoenix

tonight. How does one pack for such a trip? What is the haute couture

of hospitals? Or should I just resign myself to the breezy cotton gown

with the little string ties? Well, at least it’s something to think about

other than the surgery itself. Denial is a wonderful ability (though it

seems as if many politicians are too good at it).

Las Vegas Anyone?July 25, 2011

We took a slight detour to Las Vegas last night on our way to Phoenix.

It turns out that in the summer Phoenix actually has rain—more

like monsoon thunderstorms—and we ran into some on our way

in. After circling, we ran low on fuel and had to land in Las Vegas.

Our 90-minute flight turned into a five-hour extravaganza, and we

arrived at our hotel in Phoenix at 3 a.m. Did I mention that the young

woman across the aisle from Allen had food poisoning and was barf-

ing during much of the flight?

Interestingly, Phoenix was relatively cool, at about 80 degrees when

we landed. We are staying at a beautiful resort, with many pools, a

golf course, beautiful views of the mountains, lovely landscaping, and

lots of birds, so we are just going to relax as much as possible today

and tonight, until my round of pre-ops starts tomorrow.

How We Carry Love

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Preparing for BattleJuly 26, 2011

I woke up early this morning and went for a swim in the lap pool.

Swimming is a good way to think, and I am thinking that I have pre-

pared myself for “battle” as best I can. I can tell I’ve developed great

intensity of focus because I advanced two levels on Angry Birds last

night! Okay, I’m off to my pre-ops.

Ready to GoJuly 27, 2011

Pre-ops went smoothly, with minimal fuss. I am an extremely healthy

person (perfect blood oxygen and ecg !) with this one regrettable

July 27, 2011, Evening before First Surgery

Judith Lieberman

– 10 –

exception. I like my team of doctors and assistants, and I was impressed

by the nursing unit on my prior visit, so I feel I’m in good hands. I’m

headed to the hospital first thing in the morning. Allen will take over

the blog for a while. Thanks much to everyone for your wonderful

comments. They mean a lot to me.

So Far, So GoodJuly 28, 2011[by Allen]

Judy’s day at the hospital started at 5:30 a.m. today, and it’s not quite

over as I write this around 8:30 p.m. Dr. Hayden emerged a little

before 7:00 p.m. to report that the surgery had removed all the tumor

with good margins and the tissue repair at the base of the tongue is

in place. Judy will be moved to the critical care unit (ccu) later, so

they can keep a close watch on the new tissue. He emphasized that

each phase is a hurdle and we have successfully passed the first one,

which was to get through the surgery without any major problems.

My sister Lisa arrived this afternoon from Boston. I’m so grate-

ful for her company and support, as I am for all the comments and

support from friends and family.

Day 1: Begin Where You StandJuly 29, 2011[by Allen]

“A journey of a thousand miles begins with a single step.” Lao-tzu,

The Way of Lao-tzu Chinese philosopher (604 bc–531 bc).

How We Carry Love

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A more correct translation of this well-known quotation would be,

“The journey of a thousand miles begins beneath one’s feet.” Or, “Even

the longest journey must begin where you stand.” The point is, rather

than emphasizing the first step, Lao-tzu regarded action as something

that arises naturally from stillness. This really resonated with me today.

Before you even take that first step, you have to reconcile yourself to

the place where you are right now. And for Judy and me, that place is

a very different reality from where we’d been before. Anyone who’s

been seriously ill knows what I’m talking about.

Dr. Hayden tried to prepare us for this when he would say in our

pre-op appointments, “Elvis has left the building.” Finally one day I

asked, “What the heck are you talking about?” He replied along this

line: “We all have assumptions, maybe they’re illusions, about how

life is ‘supposed to be.’ Well, all these illusions are about to go away

because life will be very different for you going forward.” Even after

getting answers to all our specific questions about the surgery and

its likely effects, we couldn’t really know concretely how this would

feel going forward. I’m starting to get it now, certainly, seeing Judy

almost completely incapacitated from the extensive ten-hour surgery.

But Judy’s spirit remains good and strong, considering what she’s

gone through. I’m feeling okay, too—most of the time. Judy was able

to get out of bed for a little while today and hasn’t even requested

much heavy-duty pain relief, so she’s been fairly awake most of the

day. Her request (via her writing tablet) this morning was to have

Lisa read aloud a couple of chapters from the book on the Bernie

Madoff scandal that she started earlier this week. This evening she

wanted to watch a little baseball, but there wasn’t any on tv, so I did

some play-by-play of the ninth inning of the Giants game, thanks to

Judith Lieberman

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the team’s pitch-by-pitch phone app (they won!). A few minutes of

“Project Runway” helped induce a little sleep. Overall, she has just

been trying to rest in between the nurses’ hourly checks on her vital

signs and the reconstructed tissue in her mouth.

Day 2July 30, 2011[by Lisa, Allen’s sister]

Judy is doing remarkably well, considering the extensive surgery she’s

had. Her color is good, and though she can’t speak yet, she’s com-

municating very well via writing, whether it’s to shoot the breeze or

request an adjustment in the hospital bed. And she seems to have

adapted to the various medical devices around her, some of which

have already disappeared with her progress.

Judy just did her first slow walking lap around the unit, and she is

now sitting up in the recliner. Then Allen read the local newspaper’s

sports section aloud to her at Judy’s request, and she wanted to know

what happened to the debt-limit debate in Congress. So Judy is very

much herself—including smiling and laughing at the things our Judy

would normally smile and laugh about.

As his younger sister, to me, Allen is as annoying as ever (had to

say it, since he’s watching as I write this). But he may be acquiring

an honorary md/msw by the time Judy is discharged. And his and

Judy’s love and care for each other are beautiful to watch (Allen says,

“cue the violins.”).

How We Carry Love

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[by Allen]

Afternoon highlights: Judy listened to a download of greatest hits

from npr’s “Wait, Wait, Don’t Tell Me,” and she really enjoyed the live

harp music played by a wonderful volunteer who circulates through

the hospital periodically. These better moments are counter-balanced

by some rough patches during each day and night—constant interrup-

tions, beeping monitors, the occasional temperature spike, a flare-up

of pain, not to mention the general anxiety of being in the ccu. But

overall, we are very grateful that Judy’s recovery is progressing as

planned, and we are inspired by her determination and spirit.

Day 3July 31, 2011[by Allen]

I’m happy to report that Judy’s progress continues on a steady upward

trajectory, albeit with a blood transfusion this morning due to a low

hemoglobin count. Now that she’s getting more nutrition via the

feeding tube, this shouldn’t be an issue going forward. I think Judy

currently holds the lead among all patients on the number of laps

around the ccu, and they’re expecting to move her to a regular

hospital room on Sunday.

Judith Lieberman

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More ProgressAugust 1, 2011[by Allen]

Judy moved today, as planned. Yay! This means there will be up to two

whole hours in between pokes from the nurses and other medical-care

intrusions, which we hope will mean more rest and, better yet, some

real sleep. Another mark of progress: so far, she is hitting the target

on nutrition—wonderful latte-colored glop administered through a

tube in her abdomen six times a day.

In her new room, Judy had the opportunity to look in the mirror,

and she asked me to pass along her description of her current condi-

tion: “a cross between a Cabbage Patch doll and Ursula the octopus

witch from The Little Mermaid.” To translate: Judy has some swelling

around her neck, but not nearly as much as had been predicted, and

she has several tubes hanging off her for various reasons. But all this

will mostly disappear over the next few weeks.

Despite her challenges, Judy maintains her sense of humor and

her thoughtfulness toward others. There were two examples of this

in just the last hour. One of the nurses assisting this evening, Jacky, is

an extern, who mentioned that she is finishing her four-month term

at Mayo tonight. As Jacky completes her ministrations, Judy “says”

on her tablet: “You will make a great nurse.” Then, the patient in the

next room is an elderly woman who is constantly chattering aloud to

herself in a fog of apparent dementia. Upon returning from a stroll

around the unit, Judy writes to the nurse in good humor: “She talks

enough for both of us.”

I should also mention the self-assurance and capability being

demonstrated by our children during this time. I know, they’re really

How We Carry Love

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both adults, but they’ll always be our kinder to us. Avi and Leah are

holding down the homestead for us while we’re away, even as they

are both preparing for their own big transitions coming up later this

month. Avi is starting grad school at Cal in a few weeks, and Leah

will be moving to Quebec City at the end of the month to start her

gap year at “L’Ecole de Circque!”

I’m confident we’ll all remember the summer of 2011 for a very

long time.

Message from Judy (transmitted by Allen)August 1, 2011

Judy has just discovered that she can hum, but it hasn’t improved

her ability to carry a tune. However, she did hum “Happy Birthday”

for her nephew. She sends a big thank-you to everyone for your mes-

sages. Ciao for now.

Another Good DayAugust 2, 2011

[by Allen]

Stitches were removed from Judy’s chin, and her nutrition intake

was increased. She climbed two flights of stairs, and we had several

walks around the “pod” and up to the top floor of the hospital to

catch the view of the distant desert hills. Also, Judy has already com-

pleted two New York Times crossword puzzles from her Summertime

Puzzles book, though, in the interest of full disclosure, I must note

they were “Monday” puzzles. Still, I believe that’s the new record at

Mayo Clinic-Phoenix so soon after such surgery.

Judith Lieberman

– 16 –

We said a teary goodbye to sister Lisa and wished her safe travels

back to Boston, where I believe the temperature will be at least 20

degrees cooler. We had a wonderful visit and are so appreciative of

all her help and companionship.

I’m being trained in various aspects of post-surgery care, which

has validated my decision to drop freshman chemistry in college and

any hopes for a medical career. It certainly helps to have, in the words

of nurse Wendy, a “model patient.”

Not All Peaches & CreamAugust 3, 2011[by Allen]

Today we experienced the fallibility of even the best of systems.

Due to a poor nursing-shift transition early Tuesday morning, Judy’s

pain management and nutrition care were very late. The lapse was

especially bad because they had stopped giving Judy one of her pain

meds last night (as had been planned). So it was a very stressful

and painful morning. Eventually, there was an intervention by the

nursing team lead and a follow-up by the manager, who assured us

“this is not how we do business” and promised she would report

back to us tomorrow.

Things were better by mid-day. Later, we watched the movie Dan

in Real Life. The film shows, in a poignant and sometimes amusing

way, how a supportive community can accommodate an unusual

coping mechanism—a human-size inflatable doll—adopted by the

central character to help him overcome grief and loss. We both took

some comfort in this message.

Here’s hoping for a better night and morning.

How We Carry Love

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The Flying Nun Meets ETAugust 4, 2011[by Allen]

Many good developments today. The drains were removed from

Judy’s neck and were replaced by some extensive bandages, result-

ing in a look that resembles Sally Field in her star tv role—sans the

wings. Also, the splint was removed from Judy’s left forearm, from

where the skin graft was taken for the reconstruction at the base of

her tongue. Her arm is more comfortable now, and she has some

lighter bandages there instead.

Even better, Judy now has something called a “Passy-Muir” valve*

on her tracheotomy, so she can breathe with her nose and mouth and

even say a few words and phrases—her first since the surgery seven

days ago. She sounds a little like et, but we are so grateful to hear

Judy’s voice again in any form.

And…drum roll… Judy will be discharged on Friday!!! Amazing!!!

If all goes as planned over the next two days, we will check out of Hotel

Mayo and move to the American Cancer Society’s “Hope Lodge,” where

cancer patients can stay with their caregivers during chemo, radiation,

or other treatment. Each patient and caregiver has their own bedroom

in the one-story casita, and there’s a common living room and library,

along with a communal kitchen. We’ll be there for about three weeks

while Judy receives continued outpatient care from her surgeon.

Onward and upward!

* The Passy-Muir valve was invented by David A. Muir, a 23-year-old biochemical

engineering student with muscular dystrophy. Muir would not accept the restric-

tions of a traditional ventilator, so he invented the valve that enabled him to speak.

Judith Lieberman

– 18 –

Uneventful is GoodAugust 5, 2011

[by Allen]

Thursday was a good day, with no major problems, I’m happy to

report. Judy’s major battle continues to be getting enough sleep. Last

night was a little better than the one before, and I think that will

improve even more once we are liberated from the hospital, which is

supposed to happen on Friday.

I received more instructions on various care and nutrition proce-

dures, which they will review with me again tomorrow. The residence

lodge does not provide any medical care, but we have the 24-hour

number for the on-call doctor, and the emergency department is five

minutes away. We’re a little anxious about this transition, but I know

they won’t discharge Judy if everything isn’t in place.

Our friend Nancy came in today to overlap one day with her

husband, Jon, who had come to Phoenix a few days ago and is head-

ing back tomorrow. It’s really nice for both Judy and me to have the

connection with home and the diversionary visits with close friends.

Hope LodgeAugust 7, 2011

Hi everyone, it’s Judy again. We moved into Hope Lodge, and I am

progressing nicely, which means that I now wear something called a

“jaw bra.” That’s a contraption that stretches around your neck and

jaw (duh!) and is used for face lifts, as well as for lymphedema swelling

from surgery. I look like a swollen gopher storing food in its cheeks

for the winter, which may be apt, as I also have the concentration of a

squirrel right now. Lots of pain meds, good moments and bad as well.

How We Carry Love

– 19 –

Many thanks to our wonderful friends Nancy and Jon for helping me

through the transition from hospital to Hope Lodge. It was a lot of

work for Allen, given that he’s been caring for me 24/7. He now has

qualifications to be a med tech and a home health assistant. He is so

wonderful. Thanks for the many comments, which I enjoy reading.

I am a little busy lately, but does anyone else have time to save our

country from the financial shenanigans being played in Congress?

Not for the Faint of Heart…

August 8, 2011

Each day is a bit of recovery from my surgeries, which I think of as

five separate procedures. I know I have not shared all the details with

many people, so here goes.

First I had the tracheotomy, which was necessary so that I could

breathe while my neck was worked on. Then there was the neck

“dissection,” which means they removed the cancerous lymph nodes

from both sides of my neck. After this, they removed the cancerous

tumor from my tongue and back of throat—a procedure that required

breaking my jaw to provide access. After that, they reconstructed

my tongue with tissue from my left forearm, using microsurgery.

They then had to graft skin from my abdomen onto my arm. (This

was the bonus “ tummy tuck” part of the deal.) I think it was about

a ten-hour job.

The extent of the surgery explains why Allen and I spent so much

time finding the right set of surgeons and the best place to be. I think

we succeeded in finding the level of expertise, experience, and care

that we wanted. The doctors and nurses who deal with head and neck

cancers are a whole different breed of person, in my humble opinion.

Judith Lieberman

– 20 –

It’s been hard to talk about all of this before now. I don’t know

why things happen, nor do I think that there is a moral to my story.

That said, I’m doing well in my recovery and feel better each day.

I think often about the power of love, friendship, courage, and faith.

Catching Up on SleepAugust 10, 2011

One of the many unexpected hard things about all of this has been

the lack of sleep. Some of you may be very familiar with the hospital

scene, and I knew that this was going to happen, but I didn’t realize

how hard it would be. In the critical-care unit, they needed to check

one thing or another every hour at least. When I moved out of the

ccu, this became a two-hour interval. For ten days, I don’t think I

slept more than an hour at a time.

I know sleep deprivation is a form of torture used somewhere,

and I can attest to its effectiveness. At various points I just stopped

trying and filled my time as well as possible so as to zone out from

what was going on. What I learned is that tv is a somewhat effective

substitute for sleep. I watched some good movies along the way. Crazy.

I was also really interested in the nurses and their stories. Nursing is

an unbelievable profession, and I had a little writing board so that I

could have at least minimal conversations (since I can’t talk yet). At

least I had a nice window with a view of the mountains. I watched

beautiful sunrises.

I am now trying to catch up. I have the attention span of a flea,

and I sleep more than my cat. I am slowly starting to remember my

time in the ccu, and to dream again in a normal way. More later…

How We Carry Love

– 21 –

RespiteAugust 12, 2011

[by Allen]

The last couple of days have been nice because we’ve had no doctor

appointments, and Mike and Marlene have been here since Monday.

They’ve been especially uplifting for Judy’s spirit and helpful to the

caregiving efforts. I think we’re giving the local pharmacies and Target

their best month ever, as we stock up on various accoutrements for

Judy’s recovery.

I’m convinced that staying away from doctors and their offices

facilitates healing. Judy continues to work on her rest, and we try to

decipher cause and effect of some of the bothersome side effects that

arise sporadically. We’re making progress there, which hopefully

will help us avoid the occasional acutely unpleasant symptoms she

experiences and allow Judy to focus on just overcoming the general

pain (I think that’s called “progress” in this situation).

We’ve also had a visit from a home nurse, who was very competent

and pleasant. She happens to be from Israel, so I get to use the five

Hebrew colloquialisms I know, and she humors me.

If the world economy implodes while we’re in Arizona, I can

assure you we won’t be staying here for the Armageddon.

Day by DayAugust 13, 2011

I am now sitting in the bathroom with the shower running to gener-

ate some humidity. I just returned from my very short morning walk.

Judith Lieberman

– 22 –

I saw a few people going in and out of the casitas, and I waved hello.

What did they see? Someone with a trach tube and a nose tube, who

still resembles a chipmunk storing food in its cheeks, wandering about

in her pajamas at 7 a.m. But everyone is very kind. Their challenges

may just be harder to see than mine at the moment.

Dealing with the trach tube has been difficult. It requires main-

tenance about every four hours, again, a challenge for sleep. Believe

me, you don’t know what true intimacy is until your spouse has had

to clean your “inner cannula” six times a day. (I will let the truly

curious look up what an inner cannula is.) I didn’t really expect

the tracheotomy to be such a big part of the ordeal, but breathing

is kind of important… Anyway, I hope to have this taken out next

week. I’m also still being fed and getting meds through my nose

tube. I will have a swallow study done in a week or so, which will

determine if I need to have a stomach tube placed or if I am ready

to swallow enough liquid food so that I can do without it. This will

be another milestone.

I think that Allen mentioned earlier that I have a little valve that

I can put on the trach tube that enables me to talk. I try to practice

with this a couple times a day. I’m getting better at it.

My doctor has told us that this type of surgery is hard on families

because it’s so visible compared to other serious surgeries, where the

patients may be much sicker and feel worse, but the effects can’t be

readily seen. I often think about how we judge each other based on

what we look like. Many people may look fine but carry much physi-

cal or mental pain inside them. Then I also think of our reactions to

those who are obviously disabled, and how difficult it is to deal with

the physical manifestation of that difference. Somewhere in these

How We Carry Love

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ramblings I think there’s a good sci-fi story about what people look

like and what they really are. Hmmm, I’ll work on that one! Anyway,

time to get out of the nice humid bathroom.

Allen and I had our 31st anniversary this past week. I made him

a card with a picture of a chipmunk. He gave me a foot massage and

back rub. We watched the beautiful Arizona sunset over the desert

and reminisced a little. Next anniversary will be better!

Local ColorAugust 14, 2011

[by Allen]

My sister Renee arrived on Friday afternoon. In addition to provid-

ing welcome companionship for both Judy and me, Renee has been a

tremendous help with Judy’s care, since she’s a physician. This also has

given me some welcome breaks from life at Casita 5. Today I made an

outing to a guitar shop to buy mandolin strings. I found the “Bizarre

Guitar” shop here, appropriately named, given the staff ’s amazing

likeness to the members of Motley Crue.

Other local color gleaned from The Arizona Republic, our daily

newspaper here at Hope Lodge: at a town hall meeting in nearby

Gilbert, John McCain declined to apologize for comments he made

previously characterizing Tea Party adherents as “fantasy hobbits”

for their insistence on a balanced-budget amendment (which failed

in the Senate). Several stalwart citizens called McCain “out of touch”

because he disclaimed any knowledge of “United Nation Agenda 21,”

which one man described as a planned takeover of the United States

by “taking over our farms.” “First our firearms, then our farms,”

Judith Lieberman

– 24 –

another man said. Thus life goes in “Paradise Valley.” This brand of

civic craziness is just a tad different from what we find at home in

Berkeley.

New Fashion TrendAugust 16, 2011

See the photo of a new trend in facial acoutrements, all from the lat-

est reality tv show, “Extreme Headgear,” produced in Arizona and

modeled by yours truly. Baristas in Berkeley are anticipated to be the

next to take up this edgy fashion trend. Okay, it might not catch on

that quickly.

Finally, I had a better night’s sleep, which means more than two

hours in a row. I’ve also moved on to the nyt Tuesday crosswords,

so I must have a few additional brain cells waking up.

Tomorrow we go back to the doctor, and we will see what my

next steps will be.

How We Carry Love

– 25 –

August 6, 2011, Taking a Walk at Mayo Hospital, Phoenix, AZ

Judith Lieberman

– 26 –

The Good, the Bad, and the UglyAugust 17, 2011

Well, every day has its good and bad moments. Today I took my first

real shower, which was very wonderful. My wounds are healing nicely.

I slept in again, and when I went outside in the already-hot morning,

I saw the very cute ground squirrel scampering around. Allen went

out and bought me a new cd player so I can listen to my books on

cd. I am also going off my pain medication, and that’s been fine, so

things are really healing up.

On the other hand, going off the narcotics does have some side

effects, and so I have a bit of stomach upset. Also, the pleasant haze

of the narcotics has gone, so reality bites, if you know what I mean.

I am supposed to be practicing “capping” my trach tube, which I am

finding unexpectedly difficult, so that’s going quite slowly. It may just

mean that I’m not yet ready to have it removed, which is disappoint-

ing, as I hoped to have it out this week. Who knew breathing could

be so challenging?

The Ugly: The graft on my arm will have quite a tale to tell. I’ll

have to come up with a good story, like being mauled by a bear or

something. Also on the ugly side, the Giants’ recent loss to the Braves,

in which Brian Wilson gave up 2 runs in the ninth. Oh, well…

Thanks much for your notes, as always; it makes me feel in touch

with what is going on back home. I am longing for Berkeley.

How We Carry Love

– 27 –

Eventful DaysAugust 20, 2011

The last three days have been eventful, and I haven’t had a chance

to update until now. On Thursday I had a peg feeding tube placed

in my tummy so that I can eat that way until I can swallow well

enough. On Friday the nose tube came out, and on Saturday the

trach tube came out, replaced by a simple bandage. All good, but

very exhausting.

During the peg tube placement, the weirdest thing was the fact

that I was awake during the procedure, although, of course, sedated

and unable to feel a thing. But I remember it vividly, or at least

my view of the ceiling of the operating room. As Renee described

it, they basically stab you in the stomach and insert a little tube.

(I requested a sporty model.) Not unexpectedly, being stabbed in

the stomach doesn’t feel so great, so I was back on pain meds for

several days and hobbling around holding my stomach. All I could

think of were those westerns where people get shot or stabbed and

then just carry on. Do not believe this ever again. It hurts a lot! But

it’s excellent to be rid of the nose and trach tubes and start getting

used to breathing normally.

Renee Back to New YorkAugust 21, 2011

Today Renee headed back to New York after an eight-day stint as

my primary caregiver. Words cannot express how grateful I am for

her presence. We had many 3:00 a.m. conversations, and she helped

Judith Lieberman

– 28 –

me immeasurably in so many ways. It was a hard and yet warm and

loving time. I have always wanted to have sisters, and I feel that I am

so lucky to be blessed with sisters-in-law I feel so close to.

With Renee at Hope Lodge, Phoenix

LemonadeAugust 23, 2011

Today I met with the speech and swallow therapist, Lisa. Exciting

news: with Lisa’s helpful hints on technique, I was able to pass my

swallow test, composed of tiny quantities of a thick version of lem-

onade that I was able to get down my throat. I’m now authorized to

How We Carry Love

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“eat” things that have the consistency of a thick soup or smoothie,

kind of like applesauce. I am supposed to do 100 swallows a day, and

she encouraged me to talk to keep exercising my mouth. She also

taught me a better way to swallow my own saliva and said that I did

not need to use the suction machine. When I say “eat,” I would like

to qualify that by noting that it’s in increments of 2 or 3 milligrams,

or about a teaspoon at a time. And it takes a while to swallow each

teaspoon. Think of a baby, kind of. But I’m very pleased, and so was

Dr. Hayden, my surgeon, whom I saw later this afternoon.

While Renee was here, I tried to pump her for inside information

about the mysterious world of doctors, and surgeons in particular.

All I can say is that it’s an entirely different lifestyle and way of

being. Dr. Hayden came in to see me straight from the or, in his

scrubs. (I won’t mention how long we had to wait, but since I know

my surgery ran over by several hours, I just think of the person on

the table and understand the priorities of the moment.). He started

right in, cleaning up my arm, asking questions, and answering our

many questions. He mentioned that Lisa had called him in the or

to tell him about my swallowing. Then the beeper went off, and he

had to run back to surgery. His very excellent nurse finished up the

bandaging, etc.

One of my challenges right now is a general stomach upset and

not getting enough calories. I am super glad that I gained about

10 pounds before my surgery, as I am now losing weight. Hopefully

this will improve over the next few days as my stomach recovers. I also

hope that the tiny amounts of real food will give me some appetite

and make the tube feeding easier.

I heard about the earthquake on the east coast. How bizarre. Next

thing you know, we will have blizzards in the Bay Area!

Judith Lieberman

– 30 –

Where I AmAugust 26, 2011

I’m sitting in the dining area at our casita, having “ breakfast” via

my tube. (I hope this isn’t tmi.) Joy and Don are at the table next

to me; he has esophageal cancer and has just finished chemotherapy

and radiation. They are a lovely couple, and we’ve enjoyed meeting

them. They’re headed home to New Mexico today, but he’ll return in

a month for some major surgery. There are five rooms in our casita,

and the people are quite friendly, but we all have our boundaries and

respect our state of health, which involves pretty severe fatigue. The

cancer tally in the casita is prostate cancer, esophageal (2), tongue

(me), and a recent pancreatic cancer patient, who just moved in. It’s

the land of malaise, but there’s a certain camaraderie.

There’s a small library/tv room and a large and quite lovely

common area, which includes the dining room and a big living room

with a large flat screen tv. That’s usually where I sit to relax, read,

sketch, or veg out in front of the tv. The casita is pretty much all

windows, with a beautiful view onto the landscaped patio and the

desert mountains beyond. I take a morning walk before it gets too hot,

and there are many birds, rabbits, lizards, and cute ground squirrels.

I haven’t seen a rattlesnake yet.

I’m still working on getting enough food into myself, but I know

this will get better with time. I do eat a little by mouth, so far mostly

applesauce, yogurt, and some liquids. It will take several weeks for the

trach hole to close by itself, and so I am slathered in gauze and tape to

protect it in the meantime. It looks a lot worse than it is. I still have

the arm bandage as well, although most of the graft is healed except

for one spot where a tendon was involved, but again this is expected

to take a bit longer. And I still am doing a good Alfred Hitchcock

How We Carry Love

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imitation in the neck-and-chin department, although the swelling

is slowly decreasing. Regaining strength is my main job right now.

Last night Allen and I and another couple (Virginia and Harry—

she has esophageal cancer) watched The Killers, a 1946 fi lm noir with

Burt Lancaster and Ava Gardner, based on a Hemingway story. Great

movie! In case anyone is interested, Burt Lancaster was a circus acrobat

before he became an actor.

I will relate one more black-humor story. Yesterday we had a

couple of follow-up appointments at one of the clinics. Afterwards we

stopped in the cafeteria for lunch. Allen had a nice salad with grilled

chicken. I sat across from him with my can of food and plastic syringe,

“eating” as well. I thought this was pretty funny.

Hope Lodge